Autism / Autism Spectrum Support Group

Father: Child's case shifts autism debate

http://www.ajc.com/opinion/content...
0411.html

By Jon S. Poling
For the Journal-Constitution
Published on: 04/11/08

Autism in the U.S. has reached epidemic levels, at 1 in 150 children.
Dr. Julie Gerberding, director of the Centers for Disease Control and
Prevention, has recently upgraded autism to "an urgent health
threat." The most contentious issue of the autism debate is the link
to routine childhood vaccines. My daughter's case, Hannah Poling v.
U.S. Department of Health and Human Services, has changed this debate
forever. Hannah has pointed us in a new and promising direction —-
the mitochondria.

On Nov. 9, 2007, HHS medical experts conceded through the Department
of Justice that Hannah's autism was triggered by nine childhood
vaccinations administered when she was 19 months of age. This
concession was granted without any courtroom proceedings or expert
testimony, effectively preventing any public hearing discussing what
happened to Hannah and why. Contrary to some reports, the Special
Masters, "judges" who preside over the "vaccine court," did not issue
a decision.

Four months later, on March 6, with trepidation my wife, Terry, and I
stepped forward to announce this news —- providing hope and awareness
to other families. The HHS expert documents that led to this
concession and accompanying court documents remain sealed, though our
family has already permitted release of Hannah's records to those
representing the almost 5, 000 other autistic children awaiting their
day in vaccine court.

Mitochondria key

To understand Hannah's case, it is important to understand
mitochondria, which act like batteries in our cells to produce energy
critical for normal function. Because the government's concession
hinged on the presence of Hannah's underlying medical condition,
mitochondrial dysfunction, some claim the decision is relevant to
very few other children with autism. As a neurologist, scientist and
father, I disagree.

Emerging evidence suggests that mitochondrial dysfunction may not be
rare at all among children with autism. In the only population-based
study of its kind, Portuguese researchers confirmed that at least 7.2
percent, and perhaps as many as 20 percent, of autistic children
exhibit mitochondrial dysfunction. While we do not yet know a precise
U.S. rate, 7.2 percent to 20 percent of children does not qualify
as "rare." In fact, mitochondrial dysfunction may be the most common
medical condition associated with autism.

Biological markers

Although unlikely, if the Portuguese studies are incorrect and
mitochondrial dysfunction were found to be a rarity occurring in less
than 1 percent of all autism, it would still impact up to 10,000
children (250,000 worldwide), based on current estimates that 1
million people in the U.S. (25 million worldwide) have autism. If, on
the other hand, the research showing that 7.2 percent to 20 percent
of children with autism have mitochondrial dysfunction is correct,
then the implications are both staggering and urgent.

Autism researchers do not currently understand whether mitochondrial
dysfunction causes autism or is simply a secondary biological marker.
Autism clearly has many different causes, and should really be
separated into multiple autism(s). I propose that we clearly identify
and research the subpopulation term of "mitochondrial autism," which
is distinguished by its unique biological, but not genetic, markers.

Based on what we know now, it is time to follow the prestigious
Institute of Medicine 2004 report regarding autism and vaccines:

"Determining a specific cause (for autism) in the individual is
impossible unless the etiology is known and there is a biological
marker. Determining causality with population-based methods requires
either a well-defined at-risk population or a large effect in the
general population."

A paradigm shift

When the IOM report was published, mitochondrial dysfunction defining
an autistic subpopulation was not firmly established. Today there is
no doubt that mitochondrial dysfunction represents a distinct autism
subpopulation biological marker. I urge health officials and the IOM
to embrace their own report and pursue this breakthrough in the
science of autism. National public health leaders, including those at
CDC, must now recognize the paradigm shift caused by this biological
marker with regard to their current position of dispelling a vaccine-
autism link.

In light of the Hannah Poling concession, science must determine more
precisely how large the mitochondrial autism subpopulation is: 1
percent, 7.2 percent, 20 percent?

Based on the 2004 IOM analysis, if the mitochondrial autism
subpopulation is found to be relatively uncommon, then all
conclusions from prior epidemiological studies refuting an autism-
vaccination link must be discarded. New studies then need to be
performed exclusively with the mitochondrial subpopulation. If
mitochondrial autism turns out to be common, then we could re-analyze
the data from prior studies to determine if these studies were
powered sufficiently based on a predicted effect size. If not powered
appropriately, the conclusion refuting an autism-vaccine link would
again have to be rejected. These statistical concepts are basic.

The current vaccine schedule, co-sponsored by the CDC and the
American Academy of Pediatrics, injures a small but significant
minority of children, my daughter unfortunately being one of those
victims. Every day, more parents and some pediatricians reject the
current vaccine schedule. In an abundance of caution, meaningful
reform must be performed urgently to prevent the re-emergence of
serious diseases like polio or measles.

Need for research

As a neurologist, I have cared for those afflicted with SSPE (a rare
but dreaded neurological complication of measles), paralytic polio
and tetanus. If these serious vaccine-preventable diseases again
become commonplace, the fault will rest solely on the shoulders of
public health leaders and policymakers who have failed to heed the
writing on the wall (scribbled by my 9-year old daughter).

The mitochondrial autism scenario that my daughter has so eloquently
painted has the CDC and public health experts logically cornered.
Denial and fear tactics won't close Pandora's Box. Whether we find
that mitochondrial autism is rare or common, there is urgent research
left to be done to fully understand the interrelationship of
vaccines, autism and mitochondria.

Reform of the vaccine schedule will be an important part of the
solution, whether vaccines play a major or minor role in autism. Our
public health agencies and programs need a reconstruction plan. Day
one of the reconstruction hopefully starts at the Vaccine Safety
Advisory Committee's Working Group, to be held at HHS headquarters
today in Washington.

Dr. Jon S. Poling is a practicing neurologist in Athens and clinical
assistant professor at the Medical College of Georgia.
Posted on 04/11/08, 09:04 pm